Emma Salisbury has worked relentlessly to raise £400,000 to pay for research and the world’s first clinical trial for a gene replacement therapy to combat a rare disease called choroideremia. Choroideremia attacks the eyes, it is an inherited eye condition that destroys eyesight.
Emma’s first contact with this disease was when her son was diagnosed. Tommy was only four. Emma knew she was a carrier of the gene and had hoped Tommy had escaped the inherited condition that made her grandfather blind at 38.
Emma was spurred into a fight, a race against time to find a treatment to save Tommy’s sight. Together with her mum, Dot Grindley, they decided to hold a coffee morning for choroideremia. They invited friends and were amazed at the response. They raised £2,500 in two hours.
Tommy Salisbury Choroideremia Fund was born and is very much a family affair. Emma’s husband Paul, 44, and children Amelia, 16, Tommy, 14, and four-year-old Johnny are all in it together and to date £400,000 has been raised for ground-breaking research at Imperial College London.
The money has been raised from coffee mornings, marathons, golf days and discos and has been invested in the world’s first clinical trial for choroideremia.
Thanks to the Salisbury team efforts a treatment for the condition, which leaves sufferers around the world blind by their 40s, could be available within the next five years.
The judges said: Emma’s determination and tenacity are extraordinary and will positively impact people all around the world.
Fight for Sight helped Emma and Paul find out more about Tommy’s condition and put them in touch with the scientist who was researching a treatment at Imperial College London. “Paul and I went to see the researcher Miguel Seabra,” says Emma. “He was amazing and, by the time we came out, we really felt there was a bit of hope.”
and so began Emma’s fundraising the Tommy Salisbury Choroideremia Fund was started in 2005, with the support of Fight for Sight.
Professor MacLaren said British researchers had only been able to lead the world thanks to Tommy’s Fund.
Read the full story on Tesco Living and about the other Tesco #MumoftheYear finalists
2015 will be the 10th Mum of the Year Awards
Tesco has awarded over 80 ordinary mums who have done extraordinary things for others.